04/30/18

A Dying Father, His Son and One Last Road Trip

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By ALEX GILVARRY

CENSUS
By Jesse Ball
272 pp. Ecco/HarperCollins Publishers. $25.99.

Jesse Ball is one of our most prolific experimentalists. His last few novels, starting with the excellent “Silence Once Begun,” demonstrate a mature style that feels less like an experiment than a means to communicate deep emotional truths without the clutter of too many narrative conventions.

“Census,” Ball’s eighth and latest novel, may be his most emotionally affecting book to date. It is also his most transparent. In a candid preface, Ball explains that he wrote “Census” in memory of his brother, Abram Ball, who had Down syndrome. Ball sets out to write a book that captures “what it is like to know and love a Down syndrome boy or girl.”

In “Census,” a father and son journey across a nameless, dystopian land. The father, a recent widower and retired doctor, has just received news that he is dying. Both he and his wife had always meant to travel, but because their son was born with Down syndrome, they talked themselves out of it. The cruelty of others kept them from the road: “Ever since he was born, our lives, my wife’s, mine, bent around him like a shield.” Now, with his wife passed on, his son grown and his own end very near, he devises a plan to become a census taker, which will take him and his adult son on a cross-country road trip.

The census itself is part of the novel’s central mystery. It is both a survey of the population and an existential measurement. The father explains, “I must, in speaking to a person, know what is special about that individual, and that data must pass through me … in such a way that what is … most special about the nation … could be known and felt.” He asks participants to tell their own unique stories, after which they are marked — tattooed — on a rib, proof that they have been tallied. While the census may sound like an Orwellian device, Ball is more concerned with his characters’ emotional lives than with authoritarian foreboding. The father and son move from region to region, entering strangers’ homes, administering the census. With each new encounter a story from the narrator’s life is revealed. The best of these recall him falling in love with his wife, a renowned clown and performance artist who is also one of the novel’s most dynamic characters. In one lovely scene, prompted by his encounter with two eccentric sisters who conjure the Beales of “Grey Gardens,” the narrator remembers a performance in which giant pieces of silverware, a knife and fork, hovered overhead as his wife and other clowns evaded them. In a novel that ruminates so heavily on death, such memories provide a celebratory sense of joy.

While Ball accomplishes the stated goal of his preface, bringing the son with Down syndrome to life, the census itself leaves a little to be desired. If the narrator aims to hear each citizen’s story, that which is “most particular, most special,” he never shares enough details to make a lasting impression. This creates a kind of flatline with regard to the central conceit. Without more of the particulars, “the small, the overlooked,” it’s hard to understand what the census is meant to measure.

Yet the spare and episodic encounters do take us to some tender places. In one scene, a mother who raised a girl with Down syndrome recognizes the narrator as someone who sees what she sees in their children: “They experience the world just as we do, maybe even in a clearer light.” More than a dystopian tale, “Census” is a profound and stirring meditation on love, loss and paternity.

Complete Article HERE!

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04/28/18

How dying offers us a chance to live the fullest life

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The price of a humanity that actually grows and changes is death.

By Rowan Williams

People still sometimes discuss the question of how you could tell that you were talking to some form of artificial intelligence rather than an actual human being. One of the more persuasive suggested answers is: “Ask them how they feel about dying.” Acknowledging that our lifespan is limited and coming to terms with this are near the heart of anything we could recognise as what it means to be human.

Once we discovered that Neanderthals buried their dead with some ritual formality, we began to rethink our traditional species snobbery about them and to wonder whether the self-evident superiority of homo sapiens was as self-evident as all that. Thinking about dying, imagining dying and reimagining living in the light of it, this is – just as much as thinking about eating, sex or parenting – inseparable from thinking about our material nature – that to have a point of view at all we have to have a physical point of view, formed by physical history. Even religious systems for which there is a transition after death to another kind of life will take for granted that whatever lies ahead is in some way conditioned by this particular lifespan.

Conversely, what the great psychoanalytic thinker Ernest Becker called “the denial of death” is near the heart of both individual and collective disorders: the fantasy that we can as individuals halt the passage of time and change, and the illusions we cherish that the human race can somehow behave as though it were not in fact embedded in the material world and could secure a place beyond its constraints. Personal neurosis and collective ecological disaster are the manifest effects of this sort of denial. And the more sophisticated we become in handling our environment and creating virtual worlds to inhabit and control, the looser our grip becomes on the inexorable continuity between our own organic existence and the rest of the world we live in.

It’s a slightly tired commonplace that we moderns are as prudish in speaking about death as our ancestors were in speaking about sex. But the analogy is a bit faulty: it’s not simply that we are embarrassed to talk about dying (although we usually are), more that we are increasingly lured away from recognising what it is to live as physical beings. As Kathryn Mannix bluntly declares at the beginning of her book about pallia-tive care, “It’s time to talk about dying”. That is if we’re not to be trapped by a new set of superstitions and mythologies a good deal more destructive than some of the older ones.

Each of these books in its way rubs our noses in physicality. Caitlin Doughty’s lively (and charmingly illustrated) cascade of anecdotes about how various cultures handle death spells out how contemporary Western fastidiousness about dead bodies is by no means universally shared. We are introduced to a variety of startling practices – living with a dead body in the house, stripping flesh from a relative’s corpse, exhuming a body to be photographed arm in arm with it… all these and more are routine in parts of the world. And pervading the book is Doughty’s ferocious critique of the industrialisation of death and burial that is standard in the United States and spreading rapidly elsewhere.

Doughty invites us to look at and contemplate alternatives, including the (very fully described) composting of dead bodies, or open-air cremations. A panicky urge to get bodies out of the way as dirty, contaminated and contaminating things has licensed the development of a system that insists on handing over the entire business of post-mortem ritual to costly and depersonalising processes that are both psychologically and environmentally damaging (cremation requires high levels of energy resource, and releases alarming quantities of greenhouse gases; embalming fluid in buried bodies is toxic to soil). Doughty has pioneered alternatives in the US, and her book should give some impetus to the growing movement for “woodland burial” in the UK and elsewhere. At the very least, it insists that we have choices beyond the conventional; we can think about how we want our dead bodies to be treated as part of a natural physical cycle rather than being transformed into long-term pollutants, as lethal as plastic bags.

Talking about choices and the reclaiming of death from anxious professionals takes us to Kathryn Mannix’s extraordinary and profoundly moving book. Mannix writes out of many years’ experience of end-of-life care and presents a series of simply-told stories of how good palliative medicine offers terminally ill patients the chance of recovering some agency in their dying. Those who are approaching death need to know what is likely to happen, how their pain can be controlled, what they might need to do to mend their relationships and shape their legacy. And, not least, they need to know that they can trust the medical professionals around to treat them with dignity and patience.

Mannix’s stories are told with piercing simplicity: and there is no attempt to homogenise, to iron out difficulties or even failures. A recurrent theme is the sheer lack of knowledge about dying that is common to most of us – especially that majority of us who have not been present at a death. Mannix repeatedly reminds us of what death generally looks like at the end of a degenerative disease, carefully underlining that we should not assume it will be agonising or humiliating: again and again, we see her explaining to patients that they can learn to cope with their fear (she is a qualified cognitive behavioural therapist as well as a medical professional). It is not often that a book commends itself because you sense quite simply that the writer is a good person; this is one such. Any reader will come away, I believe, with the wish that they will be cared for at the end by someone with Mannix’s imaginative sympathy and matter-of-fact generosity of perception.

Sue Black’s memoir is almost as moving, and has something of the same quality of introducing us to a few plain facts about organic life and its limits. She moves skilfully from a crisp discussion of what makes us biologically recognisable as individuals and how the processes of physical growth and decay work to an account of her experience as a forensic anthropologist, dedicated to restoring and making sense of bodies whose lives have ended in trauma or atrocity. The most harrowing chapter (and a lot of the book is not for those with weak stomachs) describes her investigations at the scene of a massacre in Kosovo: it is a model of how to write about the effect of human evil without losing either objectivity or sensitivity.

Perhaps what many readers will remember most vividly is her account of her first experience of working as a student with a cadaver. For all the stereotypes of the pitch-dark and tasteless humour of medical students in this situation, the truth seems to be that a great number of them actually develop a sense of relatedness and indebtedness to the cadavers they learn on and from. Black writes powerfully about the sense of absorbing wonder, as the study of anatomy unfolds, of the way in which it reinforces an awareness of human dignity and solidarity – and of feeling “proud” of her cadaver and of her relation with it.

For what it’s worth, having taken part in several services for relatives of those who have donated their bodies to teaching and research, I can say that the overwhelming feeling on these occasions has been what Black articulates: a moving mutual gratitude and respect. And the book is pervaded by the sense of fascinated awe at both the human organism and the human self that comes to birth for her in the dissecting room.

Richard Holloway writes not as a medical professional but as a former bishop, now standing – not too uneasily – half in and half out of traditional Christian belief, reflecting on his own mortality and the meaning of a life lived within non-negotiable limits. His leisurely but shrewd prose – with an assortment of poetic quotation thrown in – is a good pendant to the closer focus of the other books, and he echoes some of their insights from a very different perspective. Medicine needs to be very wary indeed of obsessive triumphalism (the not uncommon attitude of seeing a patient’s death as a humiliation for the medical professional); the imminence of death should make us think harder about the possibility and priority of mending relations; the fantasy of everlasting physical life is just that – not a hopeful prospect, but the very opposite.

He has some crucial things to say about the politics of the drive towards cryogenic preservation. Even if it were possible (unlikely but at best an open question) it is something that will never be available to any beyond an elite; any recovered or reanimated life would be divorced from the actual conditions that once made this life, my life, worth living; how would a limited physical environment cope with significant numbers of resuscitated dead? The book deserves reading for these thoughts alone, a tough-minded analysis of yet another characteristic dream of the feverish late-capitalist individual, trapped in a self-referential account of what selfhood actually is.

****

Odd as it may sound, these books are heartening and anything but morbid. Mannix’s narratives above all show what remarkable qualities can be kindled in human interaction in the face of death; and they leave you thinking about what kind of human qualities you value, what kinds of people you actually want to be with. The answer these writers encourage is “mortal people”, people who are not afraid or ashamed of their bodies, those bundles of rather unlikely material somehow galvanised into action for a fixed period, and wearing out under the stress of such a rich variety of encounter and exchange with
the environment.

None of these books addresses at any great length the issues of euthanasia and assisted dying, but the problem is flagged: Black says briskly that she hopes for a change in the law (but is disarmingly hesitant when it comes to particular cases), while Mannix, like a large number of palliative care professionals, strikes a cautionary note. She tells the story of a patient who left the Netherlands for the UK because he had become afraid of revealing his symptoms fully after being (with great pastoral sensitivity and kindness) encouraged by a succession of doctors to consider ending his life. “Be careful what you wish for,” is Mannix’s advice; and she is helpfully clear that there are real options about the ending of life that fall well short of physician-assisted suicide.

Like all these authors, she warns against both the alarmist assumption that most of us will die in unmanageable pain and powerlessness and the medical amour propre that cannot discern when what is technically possible becomes morally and personally futile – when, that is, to allow patients to let go. The debate on assisted dying looks set to continue for a while yet; at least what we have here goes well beyond the crude slogans that have shadowed it, and Mannix’s book should lay to rest once and for all the silly notion occasionally heard that palliative care is a way of prolonging lives that should be economically or “mercifully” ended.

The most important contribution these books make is to keep us thinking about what exactly we believe to be central to our human condition. It is not a question to answer in terms simply of biological or neurological facts but one that should nag away at our imagination. How do we want to be? And if these writers are to be trusted, deciding that we want to be mortal is a way of deciding that we want to be in solidarity with one another and with our material world, rather than struggling for some sort of illusory release.

Richard Holloway doesn’t quite say it in these terms, but the problem of a humanity that doesn’t need to die is that it will be a humanity that needs no more births. The price of a humanity that actually grows and changes is death. The price of eternal life on earth is an eternal echo chamber. As someone once said around this time of year: “Unless a grain of wheat falls to the ground and dies, it remains only a single seed.” 

Waiting for the Last Bus: Reflections on Life and Death
Richard Holloway
Canongate, 176pp

All that Remains: a Life in Death
Sue Black
Doubleday, 368pp

From Here to Eternity: Travelling the World to Find the Good Death
Caitlin Doughty
Weidenfeld & Nicolson, 272pp

With the End in Mind: Dying, Death and Wisdom in an Age of Denial
Kathryn Mannix
William Collins, 352pp

Complete Article HERE!

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04/27/18

Head for the right exit

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Many writers have tried to encourage conversations about dying, often with the aim of helping us achieve a ‘good death’.

Intensive care specialist Charlie Corke.

By Jane Mccredie

At dusk some years ago, I walked past an open doorway in the southern Italian village of Paestum. Just inside, a body lay on a table, candles surrounding it, as locals filed in and out, paying their respects.

It struck me at the time how different this was from the general Australian experience, where the end of life is sanitised, hidden and often medicalised to the point of cruelty.

For centuries, our ancestors would have tended their dying relatives, washed their bodies, stood vigil over them in the homes where they lived and died. Many people around the world still do this, of course, but we in the West are more likely to end our days in aged care or, worse, a hospital intensive care unit. We may be subjected to futile, traumatic interventions right up to the moment we take our last breath.

In recent years a number of writers have sought to encourage franker conversations about dying, often with the stated aim of helping us to achieve a “good death”. Notable local books have come from intensive care physician Ken Hillman, general practitioner Leah Kaminsky and science writer Bianca Nogrady. But the reluctance to talk about death remains.

“It has become taboo to mention dying,” writes British palliative care physician Kathryn Mannix in With the End in Mind:

This has been a gradual transition, and since we have lost familiarity with the process, we are now also losing the vocabulary that describes it. Euphemisms like “passed” or “lost’’ have replaced “died” and “dead”. Illness has become a “battle”, and sick people, treatments and outcomes are described in metaphors of warfare. No matter that a life was well-lived, that an individual was contented with their achievements and satisfied by their lifetime’s tally of rich experiences: at the end of their life they will be described as having “lost their battle”, rather than simply having died.

We must reclaim the language of dying, Mannix argues. Clear, unambiguous conversations about what is ahead offer support to the dying person as well as those who will mourn their death. “Pretence and well-intentioned lies” separate the dying from those they love, wasting the ­limited time they have left. Mannix first discovered the power of straightforward lang­uage as a junior doctor when a superior offered to describe to an anxious patient “what dying will be like”. “If he describes what? I heard myself shriek in my head.”

The senior doctor went on to describe in detail the pattern of dying he had observed over years of practice: increasing tiredness, more time spent sleeping, a gradual drift into unconsciousness, followed by changed respiratory rhythms until the breath finally stopped. “No sudden rush of pain at the end. No feeling of fading away. No panic. Just very peaceful … ” he told the patient.

Back in the tearoom, he told the young Dr Mannix this was probably the most helpful gift they could give their patients. “Few have seen a death,” he explained. “Most imagine dying to be agonised and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see ­something terrible.” Mannix was left amazed that it was possible to be this honest with patients­, revising her “ill-conceived beliefs about what people can bear”, beliefs that could have prevented her from having the courage to tell the truth.

Over the decades since that paradigm-­shifting experience, she helped countless people of all ages and backgrounds through the final stages of their lives. Their stories are threaded through this moving and informative book. “The process of dying is recognisable,” Mannix writes:

There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did (and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own.

In Letting Go: How to Plan for a Good Death, Australian intensive care specialist Charlie Corke offers­ practical tools to help people make and communicate decisions about how they would want to be treated at the end of life.

Corke’s professional experience leads him to paint a very ­different picture of dying from that offered by Mannix. The ­specialties of intensive and palliative care are in some ways polar opposites: intensive care does everything possible to ward off the inevitable, while palliative care accepts death, seeking to ease the patient’s approach to it.

Corke admires the triumphs of modern medicine and the many achievements of his specialty, but he has also seen how easy it is for medical treatment to go too far. Most of us will die in old age, after a long period of declining health, he writes. One crisis or another will lead to us being taken to hospital by ambulance where, in the absence of clear ­instructions from us, medical intervention will escalate:

We will spend our last days connected to machines, cared for by strangers, and separated from our family. We will experience significant suffering, discomfort and indignity, receiving increasingly intense treatment that has a diminishing chance of success. Medical technology will dominate our last days and weeks. Our family will be excluded from the bedside, huddled in the waiting room, while “important” things are done to us. Time for connection and comforting, for any sort of intimacy or the opportunity to say goodbyes, will be missed …

Books on dying: With the End in Mind; Letting Go; Every Note Played

The purpose of this book is to help people avoid that outcome. Corke offers clear advice on questions to ask doctors, on writing and sharing a plan, and on appointing a substitute decision-maker to step in if we are unable to express our own views.

Above all, he stresses the importance of clear, unambiguous communication about what we want to happen at the end of life. If there is any doubt about our wishes, maximum intervention will be the result:

Wishes matter, but it can be difficult to get them heard. Wanting to be saved is easy. “To do whatever is required to save” is what everyone wants to do for you, needs to do, and is expected to do. It’s what our medical system is designed to do. It’s the default; it’s what you get. When we want to set limits, it’s more difficult …

All in all, this is a useful how-to manual for everybody who will at some point face death (which is of course all of us).

In Every Note Played, Lisa Genova chooses a different form to explore the end of life.

Over the decade since publication of her first novel, Still Alice, which was filmed with Julianne Moore in the lead role, Genova has mined her background as a neuroscientist for fictional ­material, producing novels about ­dementia, autism, traumatic brain injury and Huntington’s disease. In her fifth novel, she turns her attention to amyotrophic lateral sclerosis, telling the story of Richard, an acclaimed concert pianist diagnosed with the disease at the height of his career.

ALS is the central, and strongest, character in this book, dwarfing the somewhat one-­dimensional human actors and the overneat redemptions they achieve. The merciless progression of the neuro­degenerative condition is described with elegant, sometimes gruesome, precision as Richard loses the ability to control first his arms, then legs and, ultimately, everything but his eyes

As in the real-life case studies presented by Corke and Mannix, the approach of death pre­sents Richard and those close to him with appalling dilemmas: How much can we ask of others? How far should we go to preserve life? What does quality of life mean?

Richard’s state of mind as his disease progresses is not helped by the hearty refusal of his brothers to accept the inevitability of his fate. “What are you doing to fight it?” one asks when he sees Richard in a wheelchair. “You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”

Richard manages a slurred response — “Goo-i-de-a” — while privately wondering at his footballer brother’s incomprehension of his condition:

Is living at any cost winning? ALS isn’t a game of football. This disease doesn’t wear a numbered jersey, lose a star player to injury, or suffer a bad season. It is a faceless enemy, an opponent with no Achilles’ heel and an undefeated record … High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.

Richard’s brothers, like all of us, might have benefited from a share in what Mannix refers to as her “peculiar familiarity with death”:

Strangely, this is not a burden or a sadness, but a lightning of perspective and a joyful spark of hope, a consciousness that everything passes, whether good or bad, and the only time we can really experience is this present, evanescent moment.

Complete Article HERE!

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03/18/18

A Matter of Life and Death

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Kevin Toolis as child in County Mayo, Ireland.

By ANN NEUMANN

MY FATHER’S WAKE
How the Irish Teach Us How to Live, Love and Die
By Kevin Toolis
275 pp. Da Capo. $26.

In his 2015 book “The Work of the Dead,” Thomas W. Laqueur takes up an ancient question: Why do we care for the bodies of the dead when we know that after our loved ones have left them they are empty shells? He begins his query with Diogenes, the eccentric fourth century B.C. philosopher who requested that his dead body be thrown over the city walls to be devoured by beasts. The corpse may be waste, “meat gone mad,” James Joyce wrote in “Ulysses,” but since our beginnings we have endowed corpses with cultural and symbolic significance. “Whatever our religious beliefs, or lack of belief, we share the very deep human desire to live with our ancestors and with their bodies. We mobilize their power,” Laqueur wrote.

The author, center, holding donkey.

The journalist Kevin Toolis does not doubt that corpses have particular superpowers. In his new book, “My Father’s Wake,” the bodies of our dead are life lessons, moral instructors of how to have satisfying lives and peaceful deaths. The tradition of the Irish wake, with rituals that predate Christianity, is our legend, “the best guide to life you could ever have,” he writes.

“My Father’s Wake” is at heart a memoir, chronicling a childhood spent between Edinburgh and remote Achill Island off the western coast of Ireland’s County Mayo, where his parents were born. When Toolis is 19, his brother Bernard dies of leukemia. He is his brother’s keeper, a bone marrow donor, but the transplant fails. The trauma sends Toolis as a young reporter out into the world, from Somalia to Afghanistan, in search of death, disease, famine and war. “I was grieving,” Toolis writes. “Not for my dead brother but for the young man who died with him and lost his mortal innocence. Me.”

The contrast between young Bernard’s death (in the city, in the care of what Toolis calls the “Western Death Machine”) and his father Sonny’s death (at home in old age on Achill) sets up Toolis’s castigation of modern medicine and death rites. But it is Toolis’s fine skill at showing the means and aftermath of death rather than his prescription for how to improve dying that most animates “My Father’s Wake.”

“Under the greenish light of a fluorescent tube, Eliza’s hands writhed involuntarily at her wrist as if seeking to escape their dying host,” he writes of a 20-year-old Malawian girl who dies in the middle of the night of AIDS. In the local dialect, Toolis tells us, the disease is known as matantanda athu omwewa, “this thing we all have in common.” Toolis’s writing is so visceral and profound when he is near dying bodies that the lessons of such experiences become evident — so evident, indeed, that the unfortunate framing of “My Father’s Wake” as a how-to for urban Westerners feels a bit clumsy and redundant.

Early in the book, Toolis implores us to face our mortality by calculating the date of our death, “the end point for you.” In the book’s final chapter, “How to Love, Live and Die,” he offers this advice: “If you can find yourself a decent Irish wake to go to, just turn up and copy what everyone else is doing,” and “take your kids along too if you can.”

These bookends undermine Toolis’s manifest intellectual curiosity about contemporary medical and funerary practices. Studies indeed show that when dying patients plan for and accept their impending death, their family members more ably manage grief, but Toolis never sheds light on why that is. Nor does he identify where or how the funeral industry — “the dismal trade,” as Jessica Mitford called it in 1963 — has gone wrong. Grievers in funeral homes touch their corpses too.

I can’t help wishing that Toolis had kept the beautiful memoir of his life-and-death experiences and thrown the self-help curriculum over the city walls to be devoured by beasts. There really is no greater truth than a corpse.

Complete Article HERE!

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01/31/18

With the End in Mind & Letting Go review: Ways to have a good death

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By Gail Bell

In my early years in hospital pharmacy we made Brompton’s Cocktail in accordance with prevailing clinical guidelines, that is, “to order, for terminal patients”. The cocktail consisted of morphine crystals, cocaine powder, alcohol, syrup and chloroform water and it was given sparingly, on the fourth hour, to a patient in extremis.

In her welcome, engaging book, With the End in Mind, Dr Kathryn Mannix, revisits this practice, using it to highlight the days when medical morphine was spooned out cautiously, often in doses too feeble or too potent for the individual, the days, she writes “before we had worked out how to titrate painkillers”.

Informed by her staff that a new hospice admission was refusing morphine on the basis of bad memories of Brompton’s Cocktail, she visited the dissenter personally and discovered a retired psychiatrist who had once tutored her at medical school. In his experience, patients were rendered semi-conscious by the “industrial strength drug mixture”, unable to speak coherently or with dignity, attributes he could not accept for himself or put his family through. Mannix conquered the role reversal implications of ministering to her one-time mentor and employed her softly, softly conversational approach to bring him to a position where “he might allow that medicine had progressed” since the 1980s.

Mannix is a British palliative-care specialist who, in her own words has spent “half a lifetime … keeping company with the dying”. Her book is part memoir, part witnessing and a good part wise counsel in best practice for the dying. Her strong suit is conquering the moment with a quiet conversation, often begun in an atmosphere of heightened emotions, fixed beliefs and the competing interests of family gathered at the deathbed.

She is a natural storyteller with an eye for detail, dialogue and the telling moment. “I am offering the reader my eyes and ears, my seat at the table, my place in the conversations, and my perspective on events.”

As recently as 2016, Australian author, the late Cory Taylor, wrote in Dying: A Memoir: “For so many of us, death has become the unmentionable thing, a monstrous silence. But this is no help to the dying, who are probably lonelier now than they’ve ever been.”

Mannix wants the lost vocabulary as well as the etiquettes of dying brought back to the death bed. She teaches families what to expect, to give each phase of the body’s shutting down a name. She begins with “the gradual increase in daytime sleeping, the gradual reduction in time spent awake” and ends at Cheyne-Stokes pattern breathing, cycles of fast-to-slow breaths, often with long gaps between, until the “gentle ending of the cycle”. The approach of death, she hopes, will one day be conceived more generally as a process, like birthing, moving stage by stage to an outcome.

The other string to Mannix’s bow is her qualification as a Cognitive Behaviour Therapist, a discipline she used to develop coping strategies for people facing impending death (she wrote Britain’s innovative CBT First Aid Plan for palliative care).

This psychological intervention is reported to dramatic effect in the case study of 22-year-old Mark, who was in the end stage of cystic fibrosis with no transplant available. He was incapacitated by panic attacks, gripped by fear and very angry. Mannix took his fear, put it on paper in a diagram and allowed him to discover how adrenaline was driving the circuit, creating a self-defeating increase in his panic.

The liberating effect of studying the pattern allowed Mark a few months of relative freedom from fear (including a pub outing with mates) before he developed a fatal chest infection. Mannix was called to see him and was greeted by Mark at his most triumphant: “You should be f—ing proud of me … I’m f—ing dying and I’m not f—ing panicking!”

Dr Charlie Corke is an Australian intensive-care specialist and a strong proponent of timely advanced-care planning. His book, Letting Go, walks the same terrain as Mannix but his map is the ICU of a busy hospital where decisions are made on the run, as it were, not in the relative quiet of a hospice setting. His patients arrive in ambulances, desperately ill, close to death, often unable to communicate their wishes, and reliant on a frantic relative’s instructions.

“Doctors and families feel a tremendous responsibility to do something to save (or extend) life,” he writes. “This happens however unpleasant the medical journey is likely to be — and however poor the outcome.”

In crisp, clear prose Corke confronts the reader with the scenario most of us in Western society are likely to face after a period of declining health and function: ambulance, hospital, unconsciousness, no plan in place, family disagreements about treatment, escalation of medical intervention, and finally, our last days spent “connected to machines, cared for by strangers, and separated from family”.

“Medical terminology will dominate our last days and weeks,” he writes.

While not denigrating his own profession, he takes a humanistic approach to its limits. The reader learns of the “covenantal ethic” whereby a surgeon promises to use his or her skills “to battle death on behalf of the patient. In return, the patient puts their trust in the surgeon and accepts whatever is required”. The covenant can have unwanted outcomes, notably when a surgeon has not been given prior permission “to stop if things [go] badly”.

Keeping in mind that “saving is what doctors do”, Corke advocates forward planning well in advance of old age and infirmity, in writing, with the added backup of an appointed decision maker.

He presents brief case histories to show how things can go wrong. Rosalie’s story, for instance, gives pause for thought when appointing a decision maker. She chose May, her only daughter, as her agent. May gave up her job to care for her mother and swore to sensitively respect her mother’s wishes. When Rosalie was taken to hospital after developing a severe infection, May acted upon her mother’s stated wishes: comfort care with no burdensome attempts at cure.

However, May’s five brothers arrived at the hospital and exerted pressure on May to instruct the doctors to do everything possible to “save Mum”. Rosalie was put on life support, had six operations, developed multiple organ failure and finally died. May, writes, Corke, “seemed crushed and guilty”. The message is clear, he summarises, inform everyone concerned beforehand and obtain reassurance that all will respect the bargain.

Making choices is hard. Corke suggests that “prior (well-considered) wishes should carry more weight than a later decision made in a crisis”. And he covers all the bases, from religious to legal ramifications, to distorted portrayals of the success rates of CPR in TV and film, and emotive journalism around withdrawing life support.

The book ends with practical tips and accompanying case histories, tying up Corke’s thesis with the kind of wise, informed advice we crave in the era of Dr Google, advice that may be more useful than we think in light of the recent Productivity Commission Report into palliative care in Australia. Seventy per cent of Australians wish to die at home, without pain and surrounded by family. The “without pain” part is the work of the severely underfunded palliative care sector. Fourteen per cent achieve that goal.

As a manual for how to avoid ending up in ICU, in what one of Corke’s patients called “the bad bit at the end”, Letting Go is a guide book for our age.

Complete Article HERE!

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01/23/18

With the End in Mind and From Here to Eternity review – how to banish fear and shame around dying

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Two very different books about death, by Kathryn Mannix and Caitlin Doughty, look at how we can face our final days with practicality, adventure and joy

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When John Keats was dying of TB in Rome, just 25 and far from family and home, he wrote a series of beautifully judged, empathetic letters of farewell that deal lightly (yet never falsely) with his physical suffering and his emotional anguish. From the shrinking circle of his life, from his frail body drowning in itself, he reached outwards towards the friends he was leaving. In his final letter, he wrote of living a “posthumous existence”; his last phrase becomes his eloquent, courteous and self-effacing goodbye before he exits the stage on which he has had such a small parcel of time: “I always made an awkward bow.” Dying as a performance, dying as an art and a practice, dying as something solemnly profound and sorrowful and at the same time as normal, natural; dying as physical and as spiritual; dying as the end of a whole world because, as Oliver Sacks wrote, when dying himself: “There is no one like anyone else, ever.”

We live in our bodies and die in our bodies. In previous centuries, death was familiar and not hidden behind institutional walls: before the 20th century, there would have been scarcely an adult who had not seen their parents, some of their children, and their friends die. Moreover, there was faith that it was not the end. People witnessed death, dealt with it, prepared for it, even embraced it (John Donne used to sleep in his own coffin; Jeremy Taylor wrote his 17th-century manuals for the soul, Holy Living and Holy Dying, which became the preeminent works of the ars moriendi tradition; in The Tempest, Prospero consigns himself to an old age in which every third thought will be of death). Now, although we live with the sense of our own ending, we don’t really. We know we’re going to die, but we don’t know. Our body doesn’t know, except in dizzying moments of terror, until the sentence has been uttered and the gallows are being built under the window. Even then, death is often held at bay and life prolonged at all costs: the fragile and disintegrating body is plugged into machines, pumped full of oxygen and blood and drugs, its gallant heart restarted and kept going, no matter the pain, no matter the hopelessness of the endeavour, no matter that at a certain point this isn’t living, just a slowed-down, drawn-out, painful and undignified dying.

It has become easier to live longer, but harder to die well. Most people want to die at home; most die in hospital. Most want to be with family; often they are alone or with strangers. “Their death has been stolen from them,” writes Seamus O’Mahony in his bracing and unsentimental account of dying, The Way We Die Now, which charts how something that used to be public and acknowledged, with a common script, has become an aggressively medicalised and bureaucratic process placed in the hands of experts; sometimes banal, sometimes farcical, sometimes painful or undignified. Modern, sanitised death becomes a dirty little secret, almost embarrassing: our language circles round it, we don’t like to name it, cross the road to avoid those recently touched by it, and shy away from the physical, squeamish fact of it, so that the dead body is whisked away, frequently embalmed (for fear of its smell), cremated in “facilities” that are often in industrial zones.

Lady with the Lamp: Florence Nightingale tending the sick and dying.

Have we lost our way with dying and with death? In the last few years, there has been a crowd of books by doctors, scientists, writers and people who are scrutinising their own departure that have sought to show us different, kinder ways of ending: Atul Gawande, Oliver Sacks, Henry Marsh, Jenny Diski, Tom Lubbock, Marion Coutts, Paul Kalanithi, the luminous final poems of Helen Dunmore… the list is long. Behind them all stands the austere, magisterial work by Sherwin Nuland written in 1993, How We Die. Now Kathryn Mannix joins this distinguished group and her voice, though quiet and calm, is distinctive. A palliative doctor (or “deathwife”), she spends her days with the terminally ill and their families, witnessing and supporting them at times of intense suffering, terror and loss. About a quarter of deaths are sudden and unexpected, but she usually sees the ones that come slowly, over months or years, and while much of her work is diagnostic and medical, one of her crucial tasks is to help those who are dying and their families find ways of dealing with life’s final, great event.

With the End in Mind: Dying, Death and Wisdom in an Age of Denial is Mannix’s account of ways of dying, through a series of vivid stories, most of which disguise the protagonist, some of which are composite tales stitched together from several cases, and all of which are heart-wrenching testimonies to human courage and love. Her purpose is to describe many forms of death – the young man with testicular cancer treated in the room dubbed “the Lonely Ballroom”, the dying mother in the hospice who manages to walk her daughter up the aisle, the 22-year-old with cystic fibrosis, the teenager with leukaemia – and to show how in each case, while a death may be emotionally harrowing, it need not be intolerably painful; while it may be tragic, it need not be ghastly or full of the chaos that accompanies too many ends.

Like those romantic portraits of Florence Nightingale holding her lamp aloft as she walked between beds of maimed and dying soldiers, Mannix’s aim is to shed a soft, clear light on a subject she feels is too often avoided. She wants us to think about what dying and death mean for others and for ourselves and take the fear and recoil out of the subject. Mild, tender and conciliatory, she is punctiliously even-handed. If one story shows how denial is toxic and the truth needs to be gradually and gently revealed, in another she demonstrates the usefulness of denial; if one describes how precious time can be won for a patient, another is an example of how prolonging life can be cruel and death a necessary kindness. One person’s good death is not another’s – we all need to find our own way to take our bow and leave the stage.

I agree with almost everything Mannix says; I would like her, or someone like her, to be my compassionate, wise doctor when I lie dying, easing me out when my time has come. Yet in her desire to show that death can be well managed, she leaves out the mess, fear, pain and unpredictability of so much dying – its scandal, its wildness and its impossibility. Not all passing can be gentle and not everyone can be brought to acceptance in the face of their own obliteration. However we dress it up and think about it, death remains blankly ungraspable and stark.

Enter Caitlin Doughty, American mortician, joyful member of the death-positive movement, who describes what happens to our mortal remains with boisterous relish – “ya tell it like it is”, she wrote in her first book, Smoke Gets in Your Eyes. Skin slip is skin slip; putrefaction stinks. The body fails and the body rots and death is a tragedy and a farce. Jaunty, boisterous and unsentimental, Doughty believes that we in the west have made death and its aftermath into a corporate, perfunctory affair, in which the meaning of an ending is denied. Her mission is to “reclaim public understanding of dying” and to bring individuality and joy back into our dealings with the dead – and so, in From Here to Eternity, she embarks on a journey of discovery: to the only open pyre in America; to a sky burial in Tibet, where the body breaker slices the corpse into parts, pounds the flesh with a mallet, mixes it with barley flour and yak butter or milk, and leaves it to the shrieking vultures to consume; to burial towers in India; to the people of Tana Toraja in Indonesia, where mummified bodies are cared for in their home (offered food, dressed, even given a bed with the living) over months or years until the family can sacrifice an animal and put the dead to their final rest; to Barcelona’s mass bone pits; Mexico’s Day of the Dead. Skulls used as flowerpots, bodies made into compost on a body farm, corpses covered with rose petals, funerals conducted by men with dreadlocks and purple frock coats – what Doughty relishes are those rituals that acknowledge death, its bodily fact and its emotional enormity.

And although the book is in love with extremes, it actually shares Mannix’s desire to be balanced: one culture’s practice is another culture’s taboo. We might not like the thought of ripping the rotting flesh from our loved one’s bones, but for some, burning a body is equally repugnant. What is important is “to hold the space” – to banish our fear and shame, and create a ring of safety around the grieving family and friends where they can mourn, each in their own way.

Animals perish; only humans die – because we are creatures who are aware of our own mortality. This awareness, which can feel vertiginous, unendurable, is also what gives us selfhood, and life shape and meaning. “Death destroys a man; the idea of death saves him,” wrote EM Forster. It is Henry James’s “distinguished thing”, Martin Amis’s backing to the mirror, Rochefoucauld’s sun that we must not stare at too long lest we go blind with seeing. It’s the great nothing; the everything, which makes us and unmakes us, and to which we all come in the end. Nothing is more certain; nothing more bewildering, strange, scandalous, downright impossible, forever true.

Complete Article HERE!

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01/19/18

‘The Bright Hour,’ by Nina Riggs and ‘The Art of Death,’ by Edwidge Danticat

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The Art of Death

By Gayle Brandeis

In her 1993 Nobel lecture, Toni Morrison said, “We die. That may be the meaning of life. But we do language. That may be the measure of our lives.” Nina Riggs and Edwidge Danticat both “do language” to explore mortality in their new books, charging each page with both measure and meaning.

Riggs’ deeply moving “The Bright Hour: A Memoir of Living and Dying” takes its title from a quote by Ralph Waldo Emerson — who, we learn, was Riggs’ great-great-great-grandfather. Riggs, a poet who clearly inherited her famous ancestor’s insight and wit, leads us through all four stages of her journey with metastatic breast cancer, which — cruelly, and at times, hilariously — intersects with her mother’s cancer journey; her mother goes into hospice and dies not long after Riggs’ mastectomy. Dark stuff, but “The Bright Hour” is indeed suffused with brightness — a series of luminous reminders that “the beautiful, vibrant, living world goes on” even in the midst of pain and loss. Riggs died in February, shortly after completing the book; her widower, John Duberstein, provides a touching afterword.

Danticat’s “The Art of Death: Writing the Final Story,” is part of Graywolf Press’ “The Art of” series in which authors explore specific craft elements of creative writing. The book offers a critical examination of how and why writers — a broad, at times dizzying, array, including Zora Neale Hurston, Joan Didion, Gabriel Garcia Márquez and Danticat herself — address death in their work.

“We write about the dead to make sense of our losses,” she writes, “to become less haunted, to turn ghosts into words, to transform an absence into language. Death is an unparalleled experience, so we look to death narratives, and to the people in our lives who are dying, for some previously unknowable insights, which we hope they will pass on to us in some way.”

These books are somewhat the inverse of one another: Riggs weaves literary criticism into her memoir, while Danticat weaves memoir — focused largely, wrenchingly, on her own mother’s death from cancer — into her literary criticism. Both writers quote Michel de Montaigne, who wrote extensively about mortality in the 16th century — Riggs, in fact, prefers his crankiness over her great-great-great-grandfather’s rhapsodies. He even becomes a muse of sorts to Riggs; she writes, “I can hear Montaigne hollering: break it open, look inside, feel it, write it down.”

“The Art of Death” helps explain why “The Bright Hour” is so affecting. “The more specifically a death and its aftermath are described,” writes Danticat, “the more moving they are to me. The more I get to know the dying person on the page, the more likely I am to grieve for that person.” Riggs writes about her own dying — and living — with stunning, tender, specificity. Take, for example, her obsessive quest for the perfect couch. After musing over how she can figure out how to let go of everything in her life but mothering her two young sons, she writes, “So maybe I don’t try to figure it out. Maybe I just aim to get the couch right: strong bones, high quality leather, something earthy and animal and real. A surface that knows something of what it was to be alive, that warms to our touch and cools in our absence.”

Danticat allows us to mourn her mother through closely observed detail as well, showing us the purses her mother left behind, filled with hard caramel candy, letting us hear her mother’s charming turns of phrase such as this one, translated from her mother’s Haitian Creole: “Most of us enter this world headfirst, then we leave it feetfirst.”

Danticat notes that humor can help keep death narratives from becoming “overindulgent, self-righteous, self-piteous, melodramatic, sentimental, or a combination of some of the above.” Riggs peppers her writing with a great deal of humor, as in this passage after she starts using a cane: “I’m pretending that I’m starting a hip new craze that people don’t even know about yet — like vaping or lumberjack beards or bone broth. Canes: the new frontier in walking. Like walking only better. Extra virgin, cold-pressed walking.” She clearly came by her sense of humor from her mother, who, while in hospice, delighted in responding to funny texts with “the Bitmoji with a hand coming out of a grave that says ‘Literally dying!’”

Both books serve as wake-up calls, bracing reminders to live while we are alive, to appreciate this gorgeous, absurd world of ours — and the people we love within it — while we can. As Riggs quotes from Montaigne’s final essay: “Let us make good use of our time. We still have so much of it that remains idle and ill-used.”

Complete Article HERE!

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